An unexplored ethical issue in clinical research: Disclosure of individual findings in the Creando Posibilidades [creating possibilities] study

Karen Farchaus Stein, Colleen Keller, Astrid Fishstrom

Research output: Contribution to journalArticle

1 Scopus citations

Abstract

Individual disclosure refers to the presumptive ethical responsibility of an investigator to communicate to a study participant information that was collected as a part of a research study protocol and is specific to the individual. Currently, there are no federal regulatory guidelines specifying the conditions and management of disclosure of health-related individual-specific information. In this report, the authors discuss the challenges associated with individual disclosure in the context of a longitudinal descriptive study. Arguments favoring disclosure and those challenging disclosure as a general ethical duty are presented. Finally, strategies for addressing individual disclosure are discussed using a research exemplar in which risk behaviors related to health outcomes were measured.

Original languageEnglish (US)
Pages (from-to)311-319
Number of pages9
JournalResearch in Nursing and Health
Volume36
Issue number3
DOIs
StatePublished - Jun 1 2013

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Keywords

  • College women
  • Disordered eating
  • Hispanic women
  • Research ethics
  • Risk behaviors
  • Self-schemas

ASJC Scopus subject areas

  • Nursing(all)

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